There can be hope at the end of life

I remember when Susan*, a close friend of mine with breast cancer (who had been living with metastatic disease for about a year before), was told she was terminal. Beyond the shock and fear, Susan felt grief and anguish that her life would end so much sooner than she (or any of us) had expected. Suddenly, Susan had so many big questions: “What am I supposed to do now? How am I supposed to live knowing I am dying?”

Afterwards, our conversations ceased to be about treatments and clinical trials. Instead, we discussed her symptoms and ways to manage them. She had so much to do and she didn’t want to let “terminal cancer” get in her way. Although she continued anticancer treatment, she understood that its goal was primarily for palliation. As such, her questions and further decisions about treatment shifted. She refused any that might expose her to side effects that could seriously impact the quality of the life she was determined to live. In addition, Susan’s doctor had been proactive about discussing palliative care and she had enrolled in a home palliative care program.

After Susan died, I imagined her husband would be devastated, both emotionally and physically. Yet, speaking to him afterwards, I was struck to see that while he was grieving, he had already begun adjusting to a life without her. As he looked back, he explained how hard it had been to see Susan go through the diagnosis and treatment of breast cancer, to watch her deal with chemotherapy’s side effects, then to see her recur and undergo even more treatment. He had said how their experience had brought them so close, closer than in any other time in their marriage, and he was grateful to see her finally be at peace at the end of life. To me, Susan and her husband were a clear example of commitment — a living example of “in sickness and health, til death do us part.”

Although she had passed on a while ago, she came to mind again after a trip to visit with friends. We covered many topics, but one that stays with me was the heartbreaking death of the mother of my friend Andrea, and what Andrea lived through during her mom’s final months and weeks:

My mother was 87-years-old and in the last stages of congestive heart failure. I felt she had been close to death for some time, but my mom was vibrant mentally, and also very fearful of death. So, when her doctors mentioned that she could have a valve replacement to help alleviate her heart failure, she elected to proceed with the surgery, despite the significant risks. To me, the largest risk in this scenario wasn’t actually death — it was perhaps living a life so compromised that she would never be able to leave the intensive care unit (ICU). Although I had wanted her to choose palliative care, she chose the more aggressive treatment path because ultimately, she just did not want to die. As her daughter, it was my responsibility to support her.

As Andrea told her story, my mind filled with questions:

Why had her doctors even offered her this procedure, knowing her age and how sick she was?

Why hadn’t they discussed alternatives–including hospice, if she was as sick as Andrea remembered?

Did the doctors overestimate the benefits of moving forward with this procedure? What about the risks?

Perhaps most importantly, did Andrea’s mother choose to do the procedure in an attempt to prevent death?

Even as these questions ran through my mind, it occurred to me that similar questions could be asked of us as oncologists. Indeed, one could easily substitute “chemotherapy” for “the procedure” and see they are relevant, even for us, and particularly when it comes to treatment of patients who are in the terminal phase of cancer.

Andrea went on to describe what happened after surgery:

Her postoperative course became very complicated and required intensive care for several months. She never recovered. Instead, she suffered with an almost constant battle with infections, which ultimately lead to renal and liver failure. Ultimately, she lapsed into an extremely irritated but not quite unconsciousness state.

In the end, I had to decide “when” it was “appropriate” to stop treatment. It was horrible to see her like this, in severe discomfort, without dignity, and all the while knowing that she did not want to die. But, I felt in my heart that my mom wouldn’t want to be kept alive just to lie in a bed in the ICU with tubes and bags everywhere. I asked the doctors not to escalate care and to withdraw her medical support. She passed away hours later after they did.

It saddened me to hear Andrea tell her story. Her mom suffered and Andrea did along with her — an emotional turmoil that persists, even months later. It also saddened me that Andrea’s and her mother’s experience was the opposite of Susan’s and her husband’s. Andrea’s mom deserved to find a place, physically and mentally — a more private setting where dignity could have been preserved; a place where both Andrea and her mom could find closure and, maybe, even some peace.

As an oncologist, I hold out hope that I have not left those left behind with the pain and anguish that Andrea has experienced after my own patient has died. I hope that each of my patients experienced peace at the end of their own life. But I realize that, despite all of my good intentions, I think there are instances where I may have continued chemotherapy when it probably should have been discontinued earlier, and I am cognizant of the fact that I may have referred patients to palliative care too late, well past the point they would have been able to access the help I know palliative care offers. These actions, however unintentional and only made clear in hindsight, may have caused suffering in both my own patients and their families, just like Andrea and her mother had experienced.

It occurs to me that as clinicians, our role in medicine is to offer options, to give every patient a chance at life, and, for patients facing the end of their lives, perhaps a chance to “beat the odds.” It also may be that, sometimes, continuing treatment is both an easier emotional path and a more humane approach, especially when our own patients are not willing or ready to accept they are dying.

Still, no matter what field we choose, I realize that there can be hope at the end of life. Although it is usually not a hope for “more” time, perhaps it is the hope our patients can have “better” time. For me, it means a more thoughtful exploration of end of life, not only with my patient but with those who support her, before I make recommendations. As clinicians, we must help our patients and their families navigate the end of life. And, as I have come to understand even more deeply after that weekend with friends, my actions as a physician have consequences, and they can linger long after my patients have passed.

*Name changed to protect my friend and her family’s privacy.

Thanks to my friend, Andrea, for sharing her story and helping me to develop this column.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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There can be hope at the end of life 9 comments

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Ron Smith

Hmmm. Just got me thinking.

It amazes me how we live life with winkers like horses. We even put them on ourselves. We only see life straight ahead and ignore death which pursues us from the day we are conceived.

Its near the end as death is already closing fast, that illness can cruelly yank off the winkers. Sometimes denial, anger, bargaining, and sadness have time to drag us to final acceptance before the end.

Thanks for your comments. Yes, I think all of us live life “straight ahead” and ignore death as long as it is not immediately confronting us, as it is for those who are living with an illness, especially at the end of life. I do agree though- be prepared is a motto we should all follow; even when we are at our healthiest. One never knows what the future will bring- for any of us.

But even as we consider what we would want, I think involving others in that discussion and more openly communicating our preferences is so important too. Peace at the end of life is something we should strive for ourselves, and those who go on after we leave.

DSD

Suzi Q 38

“Why had her doctors even offered her this procedure, knowing her age and how sick she was?”

I don’t really know why, but I can guess.
Possibly your friend Andrea’s mother was on medicare and would pay for the procedure. Because of this, you have physicians and other medical professionals suggesting procedures and surgeries that not only help the hospital’s “bottom line,” but help theirs by the medicare payment.

Even if she were younger and had insurance, the suggestion of surgery would be more rampant. Here she is, in the hospital, realizing that this may be “the end,” and asked to make a decision quickly while she is physically ill and mentally fearful.

This is where I miss a good, strong, PCP or internal medicine doctor at the hospital who could advocate for the patient and say: “Mrs, Andrea’s mother, this procedure at your age an in your condition is very risky. You could get far worse, and spend your last days in this very hospital bed for the next few months and never get out of here. How about if we say “no” to the procedure this time and focus on getting you well and your body healing naturally with our help.”

I remember when I needed cervical surgery on my neck.
I wanted to get a second opinion at a different hospital The first hospital was so vehemently negative at my doing so. They wanted me to trust them, and have it done right then and there.
I hesitated to do so, because the surgery itself was so risky, and some of my symptoms sounded like it could be MS.
Also the first hospital was not a neuro hospital, it was a cancer hospital. I felt confident about their skill in the treatment of cancer, but unsure of their expertise in neuro, which had nothing to do with cancer. They were so mad that I “bolted” and tried to get a second opinion. Earlier I had asked for a referral from the neurologist there to the new teaching hospital, but he told me “no.”

I realized that the neuro may have been a little lazy and angry that I was not sure and took my business elsewhere. I did so because I just needed to “put the brakes” on the craziness and rush and slowly make my own decision if time permitted.

My point is that sometimes it is the money.

Also, physicians like to do procedures and surgeries.
Some are very good and do what is best for the patient.
Bravo.
Others, will hit that patient with all they have if someone is footing the bill and they are getting paid. JMHO.

Sadly, this may not have been in the best interest of the patient.
Andrea did not fight her mother because probably someone else (the doctor that was doing the procedure perhaps) had gotten to her first and convinced her that this was the way to go.

My Aunt Clara (age 100) had the chance to put in stents about 3-4 years ago. She told me a small team of doctors came in without her GP and told her that she should get this done if she wanted to live.
She told me that she didn’t want it done, as she was 96 or so and NOT 66. She did not feel she would survive it. I agreed. I called in her GP and we told him what had transpired. He asked Aunt Clara what she wanted, she told him, and that was that.

We celebrated her 100th birthday in July, and she is still living alone. She has gardeners who look after her property and her, and her family visits her at least 3 times a week. She has a FULL “dance card.”

drdondizon

Hi Suzy Q. I understand your viewpoint, especially as it is informed by some unfortunate experiences in your own life. Honestly though, having worked at some of the finest academic and community hospitals in New England, I would like to believe that at every step of Andrea’s mom’s care the motivation was not financial, but rather the desire (maybe the need) to do more, especially for a patient who was not ready to “give up”. The bigger point you raise in talking about your Aunt Clara I do support- patients are autonomous, capable of making their own decisions. In medicine, we must respect patient autonomy, and enable patients to exercise it by providing a balanced view of risks and benefits- both immediate and long term. One need not be a GP to provide that, but we should always turn to that clinician who we most identify and trust to talk through these type of discussions.
Hope all is well otherwise, Suzy Q.
DSD

Suzi Q 38

Thanks, Dr. Dizon.
I am much better.

I would like to believe that every step of Andrea’s mom’s care was not financial, but my experience had led my views otherwise, unfortunately.
It happens so often that I don’t take it personally anymore, LOL.
If I decide the answer is “no,” then please tell me why I or we should have the procedure done.

drdondizon

Agreed; sometimes the answer is no- even when we as clinicians do not agree. As I wrote previously- I am not the one who has to walk in your shoes…

Thank you so much for reminding us we need to think about palliative care much sooner than most of us in oncology would like to. I agree that it makes the transition for the remaining loved ones much easier. Regarding Andrea’s mother, I am sorry for her loss. But sometimes the aggressive management is the right choice–my own 87 year old father, a retired plastic surgeon, hid his symptoms of critical aortic stenosis from the rest of the family until he went into acute congestive heart failure last January. Unlike Andrea’s mom, he underwent open heart surgery (he was not a candidate for a transfemoral approach) in March, was out of the hospital in a week, and is looking forward to his next trip to Viet Nam with Surgicorps to do cleft lips and palates in November, which is what he was doing last fall when his symptoms became more acute. I struggle frequently with the decision to treat 90 year old otherwise healthy patients who strongly desire cancer treatments. And when people ask me “What would YOU do?” my answer frequently and inadequately is often, “I don’t know.”

drdondizon

Dear Miranda,

I really appreciate your comments, which goes to the point that no one approach can be universally applied. It is why medicine is a science and an art I think. I also think you’ve keyed on to what is often the hardest thing to say to our patients though is so true, so often- I don’t know.